As a young person with arthritis, you're likely to have regular appointments with a variety of healthcare professionals.
It's important to get the most out of your time with rheumatology consultants, doctors, nurses, physiotherapists and occupational therapists, so you get the information and the help you need to manage your condition.
Don't be afraid of asking a question. Remember no question will ever be too big or too small, and will certainly never be stupid.
Becoming more independent
You may be used to seeing your healthcare team with a parent or carer present, but as you get older you'll be encouraged to be seen for some or all of your consultation alone. This is a great opportunity to get comfortable with seeing healthcare professionals on your own, and discuss issues privately.
But it's your choice, if you want to take a parent, carer or friend to your appointment you can, or you can ask for a chaperone.
Don't be afraid to express yourself
It's important to talk honestly with the healthcare professionals looking after your care, your body is still growing and developing and it is vital your treatment keeps up with that. Talk to them about the medicine you're on and what effect it's having - good or bad.
Just be yourself, and be honest and open.
If a drug isn't working for you, or if you're experiencing side-effects that are hard to manage, let your healthcare team know, as there may be different treatments they can try.
The healthcare team are not just concerned about your medication, they know there are lots of things going on in young people's lives and they can give you support and information in those areas too.
Do talk to them if you have worries about how your condition impacts on any aspects of your life, including:
- school, college, university
- relationships with friends, relatives or partners
- your favourite activities, interests and hobbies.
Do ask questions
As you get older, topics often crop up that you'd rather discuss without your parent or carer present.
For example, you might want to ask about how alcohol affects your treatment or ask for advice about sexual health, relationships and contraception.
Sharing any worries and asking questions is important.
You have the right to have private discussions with your doctor, nurse or therapist. This means that they won't tell anyone else what you discuss with them.
The only situations where your doctor might need to talk to someone about the information you have shared is if they think:
- you're at risk of harm, either from yourself or from someone else
- you're at risk of harming someone else.
In these situations, your healthcare professional has a duty to inform the correct people. They should tell you
- what they need to say
- how this will be done
- who they'll say it to and when
- what will happen next.
Taking a list of questions on your phone, tablet or piece of paper might be useful to help you remember anything you want to discuss or ask.
Make sure you don't miss a consultation without letting them know, as the wait for the next one could be long. Remember to update your contact details if you move house or get a new number.
If you see a new healthcare professional, visit their department's website before your first visit to find out where you're going.
Support between appointments
If you're under the care of a rheumatology department, it's important to find out how you can contact people in between appointments.
All clinics have a system where you can contact them between appointments if you have a flare up or are worried about your health or treatment.
This may be a helpline which allows you to phone one of the healthcare professionals directly. Or, it may be a messaging service where you leave your name and number and they will call you back.
The systems vary, make sure you know how yours works so that you can get support urgently if you need it.
Pharmacists are also very good sources of information about medication, and they may well be able to answer your question. They will refer you to the relevant healthcare professional if they can't answer your question.
You should never stop taking any prescribed medication before talking to your healthcare team. If you've accidently missed some medicines or have another concern tell your team.
Speak to your GP
When you're in adult services, your GP will be the coordinator of your care and may also supply some or all of your medication. Your rheumatology team will work closely with your GP to make sure they've got the right information.
If you haven't had much contact with your GP in the past it's worth making an appointment to discuss your care, get to know your GP and their team and find out how to order medicines.
Talk to friends and family
Talking to your friends and family outside of your consultation, about your treatment and how you're feeling may be helpful. Parents, relatives and friends can be a huge and vital support during difficult times.